After tidal flooding from Hurricane Isabel destroyed their Dundalk, Md., home in September 2003, Larry and Shelley Tiemann figured the odds of getting hit by another storm were pretty low. Then they learned the cause of their infant son Sam’s continuing jaundiced appearance was biliary atresia, the loss of bile ducts and the single most-common reason for liver transplantation in children. Sam would immediately have to undergo surgery called the Kasai procedure to allow bile to drain from his liver.
“Things were happening so fast with all the medical issues and insurance for the house,” Larry Tiemann says. “This was another storm we had to deal with.”
But the Tiemanns quickly found a break in the clouds over Sam’s diagnosis. Surfing the Internet for everything they could find on biliary atresia, the name of Hopkins Children’s hepatologist Kathy Schwarzkept popping up. After connecting with her and staff at the Pediatric Liver Center at Johns Hopkins, and meeting other parents at the Center, they quickly felt more confident about Sam’s care and future health. Yes, Sam would likely need a liver transplant at some point, Schwarz told the Tiemanns, but she and staff would work with them 24/7 to manage Sam’s care before and after a transplant operation that, hopefully, would come later rather than sooner.
“The older he is, Dr. Schwarz told us, the stronger his immune system will be and the better his chances of a successful transplant,” says Larry Tiemann.
Little did the Tiemanns suspect, however, that Sam’s transplant would be put off for six years, which they attribute to constant coordination with accessible and compassionate staff who helped them manage both a chronically ill child and their own stress levels.
“In the past six years we’ve not had one problem getting our lab results,” says Shelley Tiemann. “Kathy Schwarz and [Pediatric Liver Center Coordinator] Mary Kay Alford are my rock. They’re like family I can call anytime day or night.”
The Tiemanns attribute Sam’s successful surgery in January—in which he received a portion of his aunt’s liver—to Hopkins’ long experience since 1987 in performing pediatric liver transplants, and to its expertise in live donor transplants. The fifth largest center in the country for live donor liver transplantation, Hopkins has performed more than 50 such procedures with excellent patient and graft survival rates for even the sickest, smallest and most complex patients.
“Sam’s operation went very well,” says Schwarz. “Now he’s home and back to playing with his brother, Ben.”
“I find modern medicine fascinating, that they were able to do what they did for Sam,” says Sam’s aunt and live donor, Cindy Bode. “It truly is a marvel.”
For more information, visit the Pediatric Liver Center website.